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Tuesday, November 11, 2014

Some of the following
resources are restricted to certain areas of Illinois. Some of the
following resources are outside of state funding organizations, with
eligibility for IL families. Please
check the websites for more information.

Grottoes of North America
Humanitarian Foundation: Helps cover the costs of dental treatment, including
hospital and anesthesia costs when needed, for children with cerebral palsy,
muscular dystrophy (and related neuromuscular disorders), organ transplant
recipients or those with mental retardation. http://www.hfgrotto.org/programs/the-dental-program/

Make a Wish: Chicago has
one of the biggest/wealthiest chapters of Make a Wish! If your SN
child is considered terminally ill or has a life threatening condition, he/she
could qualify for a wish! Wishes are in 4 categories; to be someone,
to meet someone, to go somewhere, or to have something. http://illinois.wish.org/

Northern Illinois Special
Recreation (NISRA): Year round recreational activities for the disabled. http://www.nisra.org/

Normal Moments: After
enrollment, you can ask for a "David". Normal moments will
send volunteers, or hired help for around the house needs (cooking, cleaning,
yard work, etc). They also give Thanksgiving and Christmas
dinners to enrolled families, and connect your family with donators for
Christmas gifts. http://www.normalmoments.org/

Special Needs Assistance
Program – Modest grants for medical and therapeutic equipment, not covered by
health insurance or in the case of no health insurance, throughout the United
States, from birth to age 22. www.snap4kids.org

United Healthcare
Children's Foundation: funding for adaptive equipment, hearing aids,
therapies, etc (quality of life and improvement opportunities) up to
$5,000 per year, with a $7,500 lifetime max per child. http://www.uhccf.org/about/

Used Home Medical
Equipment: database of adaptive equipment for sale (search by zipcode) http://usedhme.com/

Sunday, November 9, 2014

Transitioning to Home Care seriesWhile it is exciting to be leaving the hospital for the first time with your complex child, it can be overwhelming. One of the stressors is making sure you have all the equipment and supplies needed, for home care. These are lists of commonly used equipment and supplies for children, including those with any/all of the following: Tracheostomy, Feeding tube, Vent dependent. The hospital social worker or discharge co-ordinator can help set you up with a DME (durable medical equipment supplier). For personal recommendations of a DME near you, try asking in your local fb groups. You will need physician scripts for all home care equipment and supplies, which the co-ordinator can supply to the DME. Your home care physician should supply the DME with future equipment/supply orders. Home Care Equipment:

Air Compressor~ This is to support the function of the Fisher Paykel humidification system. Specific supplies needed to operate: o2 tubing, filter(s). Apnea monitor~ Machine used to monitor apnea (pause in breathing) events. Supplies needed to operate: mask, sensors

Co2 monitor~ Positive air pressure usually used for sleep apnea or airway obstruction. Supplies needed to operate: trach connector, sensor, mask. Concentrator~ A concentrator is oxygen that is continuously being "made" by pulling from the surrounding air. This is used to either support the Fisher Paykel system, or can be used individually for 02 support in the home. Specific supplies needed to operate: o2 tubing, filter(s). Cough Assist~ CPAP machine~ Supplies needed to operate: mask, travel bag, car charger,

CPT wand~Humidified air system~ called the Fisher Paykel. This system is used to humidify the tracheostomy airway. While our noses have hair (filters) to keep humidity in our upper airway, our trachea (mid airway) does not have a natural filter to keep humidity in the airway. The Fisher Paykel system supplies humidity to keep the airway from drying up, which can cause mucus plugs and/or collapsing of the airway. Specific supplies needed to operate: heated (coiled) tubing kit, humidified chamber, o2 tubing, sterile o2 bags. Mechanical lift (and slings)

Oxygen (02) tanks~ portable tanks used for transit, or in the home when a vent and/or humidification is not needed for moments in time. It is good to have o2 tanks for back up in the home as well (for when power goes out). Tanks come in many sizes, where the higher the alphabetical number, the bigger the tank (more oxygen it holds). The size "H" tank is too large to use in transit, but hold enough oxygen for back up supply at home. Another o2 tank option is liquid o2. This must be prescribed specifically by the physician, and carries extra risks in home care use. Specific supplies needed to operate: o2 tubing, on/off key, regulator, portable cart and/or wheelchair tank holder. Oxygen analyzer~ gives accurate reading of percentage of o2 output.

Portable concentrator~ a rechargeable concentrator that holds o2. This can be used in home for emergency backup, or on an airplane (02 tanks are not allowed on the flights). Specific supplies needed to operate: o2 tubing, battery, wall plug, car charger. Pulse oximeter (pulse ox)~ There are two types of pulse ox machines. Portable (can take with you outside of the home) and Stationary (stays at bedside). Depending on the pulse oximeter, you are able to monitor oxygen saturations (o2 levels) in the blood, heart rate (some with visual rythm), and/or Co2 levels. The Pediatrician, Cardiologist, and/or the Pulmonology specialist can write the script for this device(s). Specific supplies needed to operate: pulse ox sensors.

Scale~ If the patient's in/outs are being measured, you will need a scale to weigh diapers/nappers/briefs.

Shake Vest~

Suction machine~ There are two types of suction machines. Portable (can take with you outside the home) and Stationary (stays at bedside). The suction (sx) machine is used to clear the airway of secrections (saliva/drooling). The pediatrician or PCP (primary care physician) can write the script for this device(s). Specific supplies needed to operate: filter, sx canister, sx tubing, car charger, wall charger, extra battery, sx catheters (oral and/or deep suctioning for trach).

Kayli's Story

Kayli was born with Trisomy 18, otherwise known as Edwards Syndrome. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).
Kayli has 3 older brothers, each with their own, rare disabilities.
Claim'er: Although Kayli's pictures, videos, and information are public, it shall never be used against her. It is not permitted to use Kayli's information, videos, nor pictures, for sale or profit in any way. Kayli's Krusade is to openly share hope, knowledge, resources, acceptance, faith, and to spread God's testimony of Love. You are welcome to share her story with others, as long as the intent is for her purposes, and done with respect for Kayli, our child of God. ♥